I never expected to have my whole adult life colored by cancer. In the fall of my freshman year of college, I was diagnosed with chronic myelogenous leukemia (CML). I was freshly 18 and didn’t have much of a vision for my future, but what vision I had definitely didn’t include chronic leukemia. It was a difficult and shocking time, trying to make new college friends while in and out of the hospital, navigating emotional terrain most of my fellow students were very far away from.
Today I am 30, and a CML survivor of over 12 years. With CML, I never know if I should call myself a “survivor,” as it’s ongoing forever in many cases, or say that I’m “in remission.” Doctors told me, “Don’t worry, you have the good kind of cancer,” during the hospital stay in which I was diagnosed. They’re not wrong, medical breakthroughs have taken CML from an illness with a 15% eight-year survival rate in 1983 to the present day where patients basically have a normal lifespan with daily oral chemotherapy pills called TKIs (tyrosine kinase inhibitors) that inhibit the cancer’s growth in your bone marrow. TKIs came on the market in 2001 with the first miraculous breakthrough drug Gleevec, the development of which was supported by The Leukemia & Lymphoma Society (LLS). Since then, five additional TKI drugs have come on the market. The miraculous nature of these drugs can hardly be stated enough, as much as the doctor’s comments about the “good kind of cancer” didn’t entirely soothe the real stresses cancer has created in my life. They were correct, and looking at the past 12+ years of life from the outside, you would not assume I am a cancer patient.
For just about the last decade, I have been a DJ and music producer, along with other roles in and outside of music like running a record label, not necessarily what you would expect from a cancer patient.
Music has been a lifelong passion for me, and becoming a musician has brought me so much life-sustaining joy, helping me cope with the isolation, uncertainty, and stress chronic cancer can at times provoke. Recently, I’ve been reconnecting with dance as a healing medium, using “somatic therapy” to heal trauma and stress, as well as just to have fun! Using creativity and movement to cope has been transformative for me, and in the future, I hope to find more ways to help others experience the healing and transforming power of art, music, and dance for themselves, whether it’s just for the joy of expression or to cope with stressors in life and health.
Getting this diagnosis at a pivotal age pushed me to be bolder, braver, and care less about the small things. We never know how long we have in life, so we have to make the most of it and try to leave trivial worries behind. For the most part, I do, but there are still some things on my mind around my CML and my future.
Past the age of 26, I have found navigating insurance to be frustrating and challenging at times, like many people. I consider myself very lucky in the grand scheme of health insurance woes, as I am able to get my incredibly expensive medicine covered and doctor’s visits at one of the best cancer hospitals out there. Still, the system is dehumanizing and has far too many gaps where people fall through the cracks, particularly those with less money, resources, and support. Organizations like the LLS stop up the cracks as best they are able and then some, offering in many cases life-saving support with financial assistance to patients, emotional support, lobbying for better policy, and supporting drug development and research, but they cannot fix the entire ecosystem alone.
Right now, with further cuts to health coverage and legislation under discussion in America, the uncertainty is heightened, and I am concerned about being able to reliably access my medicine in the future. It’s scary wondering how many years might I have to live if medicine access was cut off (due to trade issues, ACA cuts, or other factors)? I try not to think about it because life is full of uncertainty and living with chronic cancer means constantly living with even more of it, but ideally, these worries wouldn’t come to mind at all, as they are largely preventable and in the control of our leaders.
Making sick people or their caregivers spend the equivalent of a full-time job dealing with insurance and medical logistics is counterproductive to healing, cruel, inefficient, and much more. I do not believe this is the best we can do. I am also concerned about government cuts to research, as world-leading American cancer research is the reason I am alive and thriving today! It is in our best interests to invest in medical research and lead the future, and there are so many remaining questions about CML, let alone all the other diseases awaiting their miracle drug.
As I’ve gotten older, I wonder things about the long-term, like if I will be able to have children or how the drugs affect you over decades. I wonder if I will ever be able to stop taking the medicine and maintain a stable remission. I tried last year, but my remission failed, and the numbers went up faster than I was hoping for. I’m on a new drug now and responding well. There are many reasons to feel hopeful for my own personal health journey, and there is also so much further research left to be done on this disease and many others!
Yet, I consider it a victory and a sign of great growth that I am even trying to think about decades to come, as for so long, post-diagnosis I didn’t dare hope to have a future. I am so grateful to LLS, doctors, and researchers whose work has kept me alive and helped me thrive, and I am hopeful to see many more future miraculous scientific breakthroughs like the ones I have been so lucky to benefit from.
Isabel
chronic myelogenous leukemia (CML)
